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| Yeah, this giant stormtrooper will most likely give me nightmares hovering over my bed/chair! |
Even though we had a rough night today was really good! Ethan was able to be out of bed from breakfast until around 3pm! That is amazing considering he usually only lasts short periods of time before begging to get back into bed. We started off the day with an echo. It went well but I have to wait for the full results until morning rounds.
After that pulmonology came in to do his lung therapy. Ethan was not happy about his treatments so he told the therapist that he wouldn't talk to her today. (He ended up being nicer later in the afternoon for the rest of his treatments thankfully.)
We then had another chest x-ray and a barium swallow study. The chest xray actually showed a little improvement in his left lung! A small part of the top section has opened up, so we will continue with his current lung therapy but actually increase the intensity. We also added Xopenex treatment to try and ensure that everything stays as open as possible. The barium swallow study went well. Ethan was really nervous about getting it done because he was afraid it would taste disgusting and make him puke more. Thankfully he tolerated it all very well and only got nauseaus at the very end - I think it was just more than he was used to consuming so he was way too full. The scan showed that he has two small sections of his throat where foods/liquids are getting caught. It is not significant though and it is not causing aspiration thankfully. We just need to make sure that Ethan takes drinks after every couple of bites so nothing accumulates in his throat and causes him to choke/gag like he has been doing.
We discussed in rounds the fact that Ethan has been on most of his treatments at home, so we are definitely trying for discharge on Sunday! We have oxygen for him, his smart vest lung treatments, nebulizer, and we have done a feeding tube in the past with him. He has to show positive weight gain through the weekend, and if that happens as well as no other problems we should be able to get out of here! We are still working on good pain control - mainly stomach. I don't know exactly what's going on with his belly, but it is definitely not happy. We are still doing tube feeds. They were continuous slow feed up until this evening. At 7pm he had his first bolus feed. He complained of stomach pain, but of course he had been gagging before even starting the feed. He is taking Zofran as needed, Pepcid, gas drops, as well as multiple laxatives/stool softeners. Hopefully his belly will continue to tolerate the feeds and his oral intake increases without belly pain.
We were able to spend a lot of time roaming the hospital today since Ethan felt good enough to be up in his wheelchair. We took a trip to the rooftop pavilion and it was really nice to be outside again!
We are hoping and praying that Ethan's energy levels improve even more tomorrow. He was able to take his longest walk yet since surgery! He complains that it hurts his legs - because his muscles are so deteriorated and it tires him out.
Please continue to pray for his belly pain to ease. Also please pray that his lung improves. We need his INR to decrease to his normal range (it is currently too high at 3.5). We are aiming for 2-2.5 so now we are messing with his Coumadin dose. It is most likely due to the huge change in his nutrition, and all the blood products and fluids he received over the past ten days. Please pray that we have continued improvement overall, great pain control, and ability to tolerate food. Thank you so much for all of your prayers, love and support! It is so appreciated!
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| The kids find this toilet funny because the seat is enormous! We are finding humor in the little things at this point LOL |
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